Maciah's Journey: A Valentine's special for a sweetheart

February 9, 2013

Watch Maciah Moore roll around the floor for a few minutes, as she laughs and pushes herself off the ground with limited success, and it's hard to believe she isn't built like other babies.

Sometimes Maciah's condition - she has congenital scoliosis and thoracic insufficiency syndrome, meaning her chest is half the size it should be - makes her more limber than the average 9-month-old.

"Sometimes I'm holding her and she just turns herself all the way around - it's a shock," said her father, Dave.

Article Photos

PHOTOS PROVIDEDMaciah Moore is held by her mother, Laura.

For someone with a presumably painful condition, Maciah usually is good-spirited.

"A wallflower she will never be," said her mother, Laura. "She gets passed around at church more often than not."

Maciah was born last April 30, on Laura's birthday. Her scoliosis was diagnosed in her ninth week in utero. Her chest condition was found later.

"It was found originally in English bulldogs, and only recently diagnosed in humans," Laura said.

The Moores, of Williamsport, will take Maciah to the Children's Hospital of Philadelphia on March 26 for the first of many surgeries by Dr. Richard Campbell that should help her have some semblance of normal growth.

"He invented this procedure, the (vertical expandable titanium rib) surgery," Dave said. "Normally it's a six-month waiting list to see him, but with the severity of the case, he took us in two weeks."

Campbell will insert rods from Maciah's collarbone to her pelvis that will help to straighten her spine and chest.

The first round of surgery will take a minimum of eight hours and cost between $500,000 and $750,000, depending on the length of stay.

"She'll have to go back every three months for up to two weeks to have the rods expanded," Dave said.

"We did not know the severity of surgery until we learned people can get infections and die ... I guess with 3 pounds of metal in the back, the body can reject that sometimes."

The Moores have met other families in their situation, some with toddlers who already have undergone more than 40 surgeries.

"God has blown our minds over the past year," Dave said. "We've had to learn how to be humble, learn to receive ... we've had so many opportunities to witness.

"Because of my trips overseas (as a lay minister), we have churches in Romania, Bolivia, Haiti, Canada, Scotland - they're all praying daily for her. We have 39 churches praying for her," he added.

The Moores plan to start a nonprofit ministry to help families with similar stories.

"We want to expand on what's out there," Dave said. "We try to get to the Ronald McDonald House in Philadelphia, but that's only happened three of seven times we've gone down ... when you're talking about getting $8,000 or $10,000 together, there's not that many who can put that money together."

Insurance has, for the most part, covered the Moores' expenses so far. Living expenses will add up, with so many trips needed.

To help cover their expenses, the Moores will hold a Valentine's dinner and dance at Citychurch, 36 E. Fourth St., from 6:30 to 10 p.m. Friday and next Saturday.

Tickets may be purchased up to the day before each dinner by calling Dave at 494-5100 or visiting the "Maciah's Journey" page on Facebook. Tickets are $30, and the entree options are crab-stuffed haddock, beef tenderloin or champagne chicken breast.

Donations also may be sent to "Maciah's Journey" at Pine Creek Valley Christian Church, 20 Locomo Lane, Jersey Shore.